Pernicious Anaemia Society
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Any advice appreciated!

Hi and thanks to everyone involved in this forum.

I have a few questions about my daughter if any one can help. I’ll give a little background information first.

Over the last few years, my daughter has been complaining about concentration issues. Lately she has been having meltdowns and is sleeping excessively. She was also really successful in sport but lately her performances have been deteriorating. She also has started getting swelling of the lower limbs before bed most nights and during exercise.

We are concerned about her mental health and we agreed to get a cognitive test done as ADHD kept cropping up as a possibility. We are currently waiting results of that from a private professional hopefully next week. We did not want to use the NHS as she would be thrown into the mental health system and forgotten about.

In the meantime I organised a private blood test through spire last week and got results same week. There were a few tests which were out of range as follows:

Test. Result. Healthy range

Globulin 22 g/l. 24-37

Vit D. 28. Nmol/l. 34-250

Vit B12. 81 pg/ml. 197-771

Folate. 1.36 ng/ml. 2.89-26.8

All other tests for diabetes, liver, thyroid and standard bloods were within range.

We managed to get to see our GP on Friday and showed her the results. She was not happy I was doing my own blood tests ( I’ll leave that conversation for another day). she has booked in some more blood tests but due to backlog we cannot get the bloods taken for 4 weeks and she will not prescribe any b12 injections until they have confirmed the results.

My question is that if my daughter in very low on B12 and is showing neurological symptoms ( ie ADHD like symptoms) then should this be classed as an emergency to prevent further deterioration. Also if the results are from a certified testing laboratory, then should they need to confirm the results before prescribing injection and further testing for anti bodies.

Any help or advice would be much appreciated.

7 Replies
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Hi Dadvatar that's an awful catch 22 situation and I think the doctor's actions (or inactions) are despicable.

It takes ten minutes for a blood test......

Your daughter needs treatment for her deficiencies now not in four to five weeks time assuming the new tests confirm the original ones.

Is there a senior doctor in the practice you can appeal to?

I am not a medically trained person but my heart goes out to you...

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Thanks for the reply and advice. I’ve read upas much as I can on low B12 but I’m confused as to what neurological symptom are. I would have put confusion and I attention in this category but most information talks of symptoms caused through spinal deterioration. Can anyone comment as I need as much information as I can for tomorrow, when I will be waiting for the surgery open to politely (or not) demand the blood test be carried out. Thanks

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1.1 General Symptoms

The following general symptoms are common in those with PA:

 The Strange Tiredness

 Fog days, where you have difficulty in thinking clearly

 Weakness

 Fatigue

 Upset stomach

 Abnormally rapid heartbeat (tachycardia) and/or chest pains

 Abnormal yellow colouration of the skin (jaundice)

 Heightened sensitivity to hearing, smell, and taste

 Vision distortion, e.g. seeing stars, or double vision

 Breathlessness

 Headache

 Cankers (ulcers) in the mouth

 Sleep disorders

 Intolerance to loud sounds, flashing lights

 Intolerance to crowded malls (needing personal space)

 Tinnitus – ringing in ears

1.2 Neurological Symptoms

The neurological symptoms of vitamin B12 deficiency may include:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

Some experience many of these symptoms and some none of them. It depends on how quickly the PA is treated and on how well managed it is.

1.3 Gastrointestinal Symptoms

The gastrointestinal symptoms of vitamin B12 deficiency may include:

 A sore tongue

 Appetite loss

 Diarrhoea and/or constipation

 Stomach pain

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I agree with clivealive "I think the doctor's actions (or inactions) are despicable."

Unfortunately many GP's know little about B12 Deficiency. Spire is a reputable test place and your GP is an idiot not to accept the results.

Your daughter's B12, folate etc are very low and needs treatment sooner rather than later. Does your surgery do their own blood testing, if so, would a hospital be quicker?

Another idea would be to join PAS and see if Martyn Hooper could help speed things up.

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Can you go to a walk in centre? or most hospitals operate a system where you can just queue for blood tests-ask the surgery to print out the blood request form.

My daughter has also been going through this nightmare. She was performing her sport at a very high level until she became a shadow of herself with extreme fatigue and lots of neurological issues. GP sent her to a consultant who basically said she had anxiety and needed psychological help. I insisted on blood tests and she was found to have B12 of 120.

After 2 months of injections she is starting to recover. She is now under a different consultant who luckily is treating this seriously.

Unfortunately you will probably have to educate yourself and fight all the way for the correct treatment.

Good Luck.

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Thanks everyone for your advice. Surgery have agreed to squeeze her in this morning after a bit of a scene not by me but the practice manager. Once she realised I would hold her personally responsible for any damage caused to my daughter, she changed her tune and became very helpful.

After reading the experiences of people on here, I was expecting a fight, but not over simple bloods taken.

Thanks again

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Hurray, one fight won.

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